Wednesday, October 31, 2012

This evening, our family Hallowe'en tradition of visiting Grandma and Grandpa, and Aunts and Uncles in our costumes, was a little different than in years past, as Lydia was tired out after one stop, and needed to return home to bed.  The boys, however, were just getting started!  (They have had their costumes ready for days!)   We weren't sure if Lydia would be up to going out, or not, so we didn't plan a costume for her.  Fortunately, she was given a large lime green decorative butterfly, in July, which we hung in her bedroom at home, above her hospital bed.  We took it down this afternoon, and she wore it, and was a lively butterfly.  She visited with her cousin and aunt, and hugged and chatted away with them - almost forgetting to even take some candy!
When resting this afternoon, she said to me, "I think I will always have a butterfly's spirit."  How beautiful is that?  Yes, sweet daughter, may it always be so.  May you embrace change and transformation, and give it all it demands from you, your whole life long.

I attended the standing room only, Courage for Lydia concert held today at Conrad Grebel College.  I think everyone in attendance was moved by the beauty and sincerity of the music presented.  To the musicians and especially the composers, Joanne Bender and Carol Ann Weaver, our heartfelt thanks for this generous gift.

This afternoon, after school, a group of Lydia's close friends came to the farm to decorate the golf cart for tomorrow.  With great energy and creativity, they decorated and jazzed up the golf cart!   I will try to include some photos in  tomorrow's blog!

One more detail to communicate about tomorrow.   We have been asked a few times if we are collecting the ribbons, afterwards.  No, we are not.  We will have large recycling containers out by the flag poles, and we are happy to recycle them. 

Tuesday, October 30, 2012

Details for Thursday

Today our MP, Harold Albrecht, spoke in parliament, thanking Canadians for their prayers for Lydia.  We appreciated his update to our nation.

Every day Lydia asks when is the green ribbon waving?  (or the wibbon rave, when it is mispronounced!)  She always exclaims "yeah!" after we tell her it is on Thursday at 5:00.  She is aware that she is not remembering, and apologizes before asking.  In general, we have seen slips in her short term memory in the last week.
We, too, are excited, to welcome you to our farm; to  stand with you and celebrate our hope, as these tattered, weathered ribbons are waved; to proclaim our faith in God through the prayers we have collectively uttered, and His gracious and breathtaking response to them; and to gather as a community who has so lovingly cared for us, and supported us in this long road that has lead to home.  Thank you.
Lydia wants to walk down the lane, as much as she can. The well decorated golf cart will follow behind, and give her breaks when she needs them. The boys are vying to be the drivers, but we will delegate this task to a family member with a license!
We will have some orange vested parking attendants to help answer any questions, or assist you with parking on Thursday.  Please park only in the parking lot, or on the south side of Erb's Road.  The fields are too wet to allow for parking in them.  Please consider car pooling, or making a drop off at our farm, and then parking at one of the many plazas in West Waterloo.  It is 1.5 km from Ira Needles Blvd. to our farm.  Police will be present to help keep traffic flowing smoothly, and to promote safety.
Visitors to our farm often exclaim how windy it is out here!  We are not sheltered, like in town, so dress warmly, as the wind really blows!
We thank you, in advance, for coming to celebrate this milestone in Lydia's recovery:  that she is at home with us, and that she has recovered so much already!  We invite your continued prayers for her therapy and recovery at home.

We have a great Lydia laugh to share with you!
Her speech language therapist, was working with her on defining words with multiple meanings.  They were talking about different meanings for the word duck.  Lydia talked about the ducks that swim on the pond, and the ducks that quack, and the ducks that waddle ... but she was stuck.  She couldn't think of any other meanings for duck.  Her therapist said, "Suppose I throw the ball, right at your head!  You'd ____________!"  Lydia eagerly replied, "I'd head it!"  So to her soccer team that is gathering on Thursday, don't toss a ball at Lydia, or she might head it into the crowd!

Monday, October 29, 2012

Lydia has had a good attitude towards her therapy today, and has done well.  We rested well yesterday and this morning too.  She loves being at home, and who wouldn't, with a younger brother who sets the dinner table, with creative center pieces, like this one below?

We are thankful for:
all of our voices joined together in singing grace around the dinner table;
love expressed by a younger brother who has had a harder time connecting with his "new" sister;
a younger brother who cares for his older sister by blow drying her hair, or helping her walk, or eat;
Daddy playing his guitar, and singing worship songs with us;
a warm house to shelter us from the storm.
One friend requested I get the blog out early tonight, in case the power goes out!  So I worked on it after dinner, and when Lydia saw it, she wanted to add her own message.  She typed it herself:

hi everyone!   

Saturday, October 27, 2012

In repentance and rest is your salvation,
In quietness and trust is your strength.    Isaiah 30:15

How often we have returned to these verses for perspective.  We find our strength in quietness and trust.   In rest, we find healing (salvation).  We are thinking the same truth applies to Lydia.  She has had two weeks of her home therapy schedule, and while it is full of good, helpful activities, it is full! We are looking to pare it down, to give her more rest time, and more down time.  Her mind is constantly processing.  We have no experience with brain injury recovery, so we listen to those who do, listen to God, and to our hearts.  And we take it one week at a time.
This morning, Lydia excitededly asked "when is the ribbon waving?"  We told her that it is this Thursday.  "Yeah!" she shouted, and clapped her hands.  We will rest more at the beginning of this week to prepare for the joy of Thursday November 1 at 5:00.
Tomorrow is Sunday.  We will make it our day of rest in small ways.  Notably , we will not update  tomorrow on our day with Lydia, but take a day of rest from blogging too.

Friday, October 26, 2012

Lydia has had a happy day today.  She challenged herself at the gym this morning, and cycled for 8 minutes and then swam 10 laps.  On Friday mornings, she has music therapy, and she loves to listen to classical music, learn about composers, and relearn how to play the piano.  She is very eager to pick up the flute again, but that may need to wait a little while.
This evening, we went to the arena for part of her brother's hockey game.  We were touched to see that the opposing team, Woolwich, taped their sticks lime green for the game.  Thank you Woolwich for your show of support.  (I grew up in Elmira, and my parents are still there.)
 Earlier this week, when Lydia was at KidsAbility, we went to her favourite store at Conestoga Mall afterwards.  Lydia had been asking to go for a couple of weeks, but we held off, thinking the experience would be too overwhelming.   Upon entering the store, the music was so loud, she was irritated.  We asked the manager if it could be turned down.  She obliged, minimally.  We wheeled Lydia around the store, and she saw some things she liked, and tried them on.  Low cut V necks, received a "that's too revealing" from Lydia.  Other shirts were equally less modest, and were put in the reject pile.  She did decide on a pair of winter weight leggings.  We made our purchase and left the mall directly.  Lydia rested in the car on the return home.
At lunch, I said to Lydia, "so you've been waiting for a while to get to your favourite store.  How was it?"  She replied, "It was ok.  It wasn't great.  Jesus is great."  Then she lifted her head and smiled to heaven and was silent for a few moments.  Once again, we were silent and felt the divine presence.
How much we can learn from Lydia.

Thursday, October 25, 2012

Today was a harder day for Lydia.  She cried more, and had higher emotional needs than in previous days.  We haven't seen emotion like this since her last week at Holland Bloorview.  It impeded her therapy at a clinic in Waterloo this afternoon.  She couldn't focus.  She just wanted to be at home.  She was tired, and discouraged.  She said she didn't think she was getting better.  We cancelled her afternoon school session to let her rest and take a break.  It was a beautiful day - hopefully the sunshine was rejuvenating` to her mind and body.
I think one of the hardest parts of Lydia's recovery is that she looks so healthy and normal.  If you don't understand or know much about brain injuries, you would be tempted to think that her capacity and abilities are "normal"(not a word we like to use, but one that communicates the idea well).  This is not the case.  Lydia is unable to filter out extraneous noises.  She has super sensitive hearing, and she tries to process every sound that she hears.  To be in a busy place, with many conversations, sounds and distractions, is exhausting.  It is overstimulating, to someone with a brain injury.
On this day, my reading of Isaiah 40 has given perspective and reminded me of the faithful provision of our God.

Isaiah 40:28-31

New International Version (NIV)
28 Do you not know?
    Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He will not grow tired or weary,    and his understanding no one can fathom.
29 He gives strength to the weary
    and increases the power of the weak.
30 Even youths grow tired and weary,
    and young men stumble and fall;
31 but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

Wednesday, October 24, 2012

"We continue to be inspired by Lydia's determination and progress.  The song title (and song) 'Indescribable' keeps coming to mind when I see how God has worked through, and is continuing to work in Lydia's life."
These thoughts were shared in an email yesterday.  Ironically, this is the song our children can be heard singing together in the car. 
Indescribable.  Yes, what God is doing is indescribable.  Unbelievable is another word, and yet we believe.  We remember the time when Lydia had just began speaking in August, and just days after finding her voice, she helped her therapist, who was groping for a word to describe Lydia's progress.  Lydia supplied "It's unbelievable".   Regularly we are amazed at her progress, and awestruck and humbled at the same time, that we get to have front row seats to a miracle.  God is amazing.  He is working amazing things in our lives.
From the highest of heights to the depths of the sea
Creation's revealing Your majesty
From the colors of fall to the fragrance of spring
Every creature unique in the song that it sings
All exclaiming

Indescribable, uncontainable
You placed the stars in the sky
And You know them by name
You are amazing, God

All powerful, untameable
Awestruck we fall to our knees
As we humbly proclaim
You are amazing, God

Who has told every lightning bolt where it should go
Or seen heavenly storehouses laden with snow
Who imagined the sun and gives source to its light
Yet, conceals it to bring us the coolness of night
None can fathom

Incomparable, unchangeable
You see the depths of my heart
And You love me the same
You are amazing, God
You are amazing, God

Tuesday, October 23, 2012

In our family, at dinner time, we check in with everyone to see who may have the "joke of the day" to share.  These jokes, are just funny things that we did, said, saw or heard that day, that made us laugh.  Well this morning, Lydia had the joke of the day today!
As she was enjoying her breakfast, she said "I could marry yogurt and granola.  I love them!"  Knowing that she had recently proclaimed that she could marry bananas, I asked her about this.  She said, "I am past bananas!"  Of course, by tonight she had moved on yet again and kissed the piece of pizza she was enjoying.
Today, I read again Isaiah 35, a chapter I had read on May 22, and was grateful for the fullness of God's transforming power that we see in Lydia.  Out of the wilderness, flowers are blooming.  He is bringing beauty and joy. Lydia is blossoming.  He is strengthening the feeble hands, and steadying the knees that give way.  Our lame girl is learning to leap like a deer, and her mute tongue now shouts (and sings) for joy!  Gladness and joy are overtaking us, and sorrow and sighing are fleeing away.
We are thankful.  Thank you, God, for coming to save.

Joy of the Redeemed

Isaiah 35 The desert and the parched land will be glad;
the wilderness will rejoice and blossom.
Like the crocus, 2 it will burst into bloom;
it will rejoice greatly and shout for joy.
The glory of Lebanon will be given to it,
the splendor of Carmel and Sharon;
they will see the glory of the Lord,
the splendor of our God.

3 Strengthen the feeble hands,
steady the knees that give way;
4 say to those with fearful hearts,
“Be strong, do not fear;
your God will come,
he will come with vengeance;
with divine retribution
he will come to save you.”

5 Then will the eyes of the blind be opened
and the ears of the deaf unstopped.
6 Then will the lame leap like a deer,
and the mute tongue shout for joy.
Water will gush forth in the wilderness
and streams in the desert.
7 The burning sand will become a pool,
the thirsty ground bubbling springs.
In the haunts where jackals once lay,
grass and reeds and papyrus will grow.

8 And a highway will be there;
it will be called the Way of Holiness;
it will be for those who walk on that Way.
The unclean will not journey on it;
wicked fools will not go about on it.
9 No lion will be there,
nor any ravenous beast;
they will not be found there.
But only the redeemed will walk there,
10 and those the Lord has rescued will return.
They will enter Zion with singing;
everlasting joy will crown their heads.
Gladness and joy will overtake them,
and sorrow and sighing will flee away.

Monday, October 22, 2012

Ribbon Waving Invitation

We have received some more inquires abour the ribbon waving homecoming, specifically with regards to who is welcome to come.  You are invited to come!  Anyone who has tied a lime green ribbon, or prayed for Lydia or our family, or been moved by Lydia's story, or has had their faith impacted by what God is doing in our midst, is welcome to come. 
We are realizing, as we go out in our community, how many people know Lydia!  Thank you for the smiles, the encouragement and the cheers.  Although Lydia is sometimes searching her mind, to see if she should know the person who just said hi to her, and commended her for her courage, she is learning to receive this well.
We have had another good day of therapy and school at home.  To her morning swim, we have added 8 minutes on the exercise bike.   She is trying to regain lost muscles and grow stronger. It is working because she is becoming steadier on her feet!
Today, Lydia had another first: she was able to use the washroom independently. 
Tonight, she prayed for the kids at Bloorview, that they would know that Jesus is always with them.  We know from our time there, that some children are there without regular family or friends in attendance with them.  She then prayed for everyone to know that Jesus is always with us.

Sunday, October 21, 2012

Courage for Lydia Concert, Oct. 31, 12:30 noon, Grebel Chapel

We want to share with you information about an upcoming free, noon hour concert On Wednesday October 31 at 12:30 at Conrad Grebel College Chapel, University of Waterloo. The music for this event has been created to "bless" Lydia, and to grant her further courage in her journey.

The composer, Carol Ann Weavaer writes: The concert is meant to give strength, courage, joy, and respect for and to Lydia. For this concert I've composed "Three Seasons", a brand new set of instrumental (non-vocal) pieces for Lydia for flute, alto saxophone, cello and piano. Within this piece are these sections: 'Summer Silence,' 'Autumn Dawn,' and 'Winter Prayers and Blessing.' This music attempts to capture different aspects of what has happened and will yet occur for/with Lydia. 'Summer Silence' is a short, wordless expression of the silence occurring for Lydia, with the cello representing her continued heart beat. 'Autumn Dawn' begins like a dawn I witnessed at an Algonquin lake this August -- at first all is obscured by mist and then gradually, distant shores become visible, and then the entire world opens up, gradually. Though there are moments of fullness of life, there is also the reminder that this world is in the 'process' of unfolding for Lydia. 'Winter Prayers and Blessing' is for the upcoming season we will all live through. The piece opens with individual and collective prayers being offered up. Then, there is a kind of group prayer, as it were, where over one pattern, players give melodic prayers. At the end of this piece there is a piano/cello 'blessing' for Lydia. I thought I had finished this piece, but came home, sat down at the keyboard and my fingers started playing this 'blessing' which emerged. So, this became the final musical statement for Lydia, for her family and medical team, and for all those thousands of people who are thinking and praying for her.

Joanne Bender will be adding some piano solo pieces and a short piece for violin, cello, and piano. This 50 minute concert will be held in our beautiful Grebel chapel with its magnificent stained glass windows and quiet, calming atmosphere.

Directions for getting there: -- follow CGR on the map, which stands for Conrad Grebel Residence on WestmountRd.

Here for more details: Courage For Lydia Poster
With Lydia home all of the time now, we have been able to arrange her therapy schedule so that she does not have therapy on Sundays. We are thankful to be at this spot where Lydia can receive the help she needs Monday through Saturday, and have Sunday as a family day, and a break from hard work. We went to church for a short time this morning, saw cousins this morning, took in part in a hockey game this afternoon, and visited with friends this evening. We also attended the first 30 minutes of vibrant song and dance performed by the African Children's Choir, at the St. Agatha Catholic Church tonight. As we made our way to our seats, so kindly reserved for us, applause for Lydia began from community members. It was a memorable moment for Lydia and for us. It has been a full day, and even with rests throughout the day, Lydia was exhausted at bedtime. Lydia recently received the book Star Quality: 50 Waterloo Oxford Students who Soared. We began reading a profile today, and talking about the tremendous obstacles this student had to overcome. This student also required a feeding tube at one time, so Lydia made a connection with her. Tonight when we were snuggled into bed together, she whispered, "When I get to high school, I want to be one of those people who inspire others." God, bless our daughter's sweet, unassuming heart, that does not recognize that her determination, courage and faith already inspire us and many others.

Saturday, October 20, 2012

We have noticed Lydia using her left hand more often, to eat, to drink, to brush her hair. This is understandable, as her right hand shakes and hinders performance, but she needs to regain muscular control, as she is right handed. Yesterday her PT suggested that Lydia wear a mitten on her left hand at meal times, and wear a weighted sock tied around her wrist on her right hand. The small amount of weight ( a handful of pennies) provides some stability for her hand. We have done this, today, and sometimes it has frustrated Lydia, but she has kept at it, trying to tame her right hand to do what she wants it to do. Recovering and relearning is hard work. We have great respect for our little warrior butterfly! (a title given to Lydia in another blog) This morning, Lydia admired my cross necklace, and asked me when I got it. I told her I had got it when I was 18, when Jesus became central to my life. Then she asked, "Can I get a cross necklace too? Jesus is the most important to me right now." I smiled and agreed with her. Wow! How she is being made new! My gold cross necklace sat in my jewellery box, relegated to the under layer, in a time, years ago, maybe even a decade ago, when it was fashionable to wear a cross, and I rebelled against the fashion by putting mine away. I didn't want to wear it as a fashion symbol. I wear my cross to remind me that Jesus died on the cross for me. It is a symbol full of love and meaning. I disagreed with it becoming some trendy symbol, void of meaning. Too many claimed to believe in Jesus, but their words and actions contradicted this truth. So my cross necklace set in my jewellery box for a long time. I pulled it out of my jewellery box shortly after the accident, and began wearing it again. I found comfort in wearing it, in holding onto the wonderous love of Christ, and His all sufficient sacrifice for me. In those days, when every breath was a prayer to Jesus to save Lydia, and restore her to us, the cross again was my symbol of hope. I have worn it regularly since then. I cling to the One who died for me, and in his resurrection power, I live.

Friday, October 19, 2012

We have heard our Nov. 1 welcome home ribbon waving referred to as a party, a celebration and a parade! In spirit,it will be all of these things, but not in reality. It will be simple. We would love to have a grand party, serve hot chocolate and short bread (favourites for Lydia), and invite you all to visit with one another and with our family; but truth be told, this is not at all possible. Lydia fatigues very easily. We would not want to overwhelm her, or risk a set back. As it is, the experience of seeing so many friends and supporters waving their ribbons, will be abundantly stimulating! (We pray in a wonderfully memorable way, and not in one that is detrimental to her recovery.) The plan is simply to have friends line our lane with their green ribbons, and for Lydia to walk or ride in the golf cart, from our Market parking lot, to our home. She will not be able to stop and talk, or exchange hugs. She will be able to smile, and say thank you. Parking will be in our Farm Market parking lot, on the grass strip along the lane, if it is not too wet, and if need be, on the newly paved south shoulder of Erb's Road. Please do not park on the north side, and cross the street to our parking lot. Erb's Road is a busy road, with an 80km/hr speed limit. Let's keep everyone safe! The green ribbons began as a symbol of support to remind our community to pray for Lydia. So many of you have prayed for Lydia. Thank you. "Stay Strong Lydia!" these ribbons say! God has strengthened and healed Lydia, by His grace, and at His pace. We celebrate His work. These tattered ribbons renew our hope and faith, and have regularly reminded us that we do not stand alone. Thank you for standing with us.

Thursday, October 18, 2012

Lydia on TV!

The highlight of our day today, was welcoming Abigail Binmann from CTV to our home to interview Lydia on how it feels to be home. Lydia was happy to smile, play piano and talk about being home.
It is truly great to have Lydia home with us -  to tuck in each child at bed at night, and then sleep in our own bed.  The 6:00 and 11:00 news feature different segments.

Here is the video:

In other media, Scott Cressman, a New Hamburg Independent reporter, wrote a story about Lydia's return to home that was published on Wednesday.  It contains some great and at times candid quotes from Lydia!

Click here to go to the story:

Lydia began private pilates instruction this morning, to help her with her physical therapy.  She was happy to return to a studio and teacher she knows and enjoys.  At times, I fight back the tears, when I see how far she has to go, or how hard it is for her to make seemingly easy movements. Some of Lydia's therapy goals in pilates are to improve her breathing, (she has developed very shallow breath patterns as a result of having had a collapsed lung), and to strengthen her legs and positioning so she can move between sitting and standing, and can walk properly.  Lydia has a very ambitious goal of playing soccer in May 2013.  We encourage her in her goals, but see the reality of how far she will have to heal and progress before that can happen.  With faith, all things are possible.  We continue to pray for a full recovery.

Eph 3:20-21 Now to Him who is able to do, immeasurably more, than all we ask or imagine, according to His power, that is at work within us, to Him be glory in the church and in Christ Jesus, throughout all generations, for ever and ever.  Amen!

His power is at work within us.  We give thanks.

Wednesday, October 17, 2012

Lydia and I went swimming together this morning.  The last time we went, she swam 6 laps, with breaks for stretching and rest in between.  Today, she swam 8 laps, also with breaks.  On one of her first laps, she said "I am going to be fourteen soon."  We counted the months until her birthday, and established that it is still 5 months away.  Then she began planning, and at every break, she would share her thoughts with me ...
"When I am fourteen, I'll be able to sleep in my own room."
"I will be able to tie my shoes all by myself, when I am fourteen."
"My hand will be steadier when I am fourteen.  I'll be able to feed myself - even soup!"  (We have had soup a few times, and it is a struggle to eat soup with a shaky hand.  It just flies everywhere!)
"When I am fourteen, I'll be able to get dressed and do my hair by myself.  I'll even be able to straighten my hair!"
And then this evening, at bedtime, she was still thinking.  Most of her "when I am fourteen" goals, were shared in the pool, but at bedtime, she said "I will be able to sing better when I am fourteen!"  We encouraged her that her singing is getting better each week.  Two months ago, she was still silent.  Her voice had not yet returned. 
We love that Lydia is so determined to get better.  It is hard work.  Tonight we opened a bottle of sparkling apple cider, to celebrate that Lydia had had a very successful day of therapy and school.  Each of her teachers or therapists had commended her for doing excellent work today. 

We enjoyed some sunshine again this afternoon, and took some photos.  Photos are becoming helpful markers of progress in this journey.   We are grateful for this one.

Tuesday, October 16, 2012

Today, we took the Teddy Bears that Lydia had received at Sick Kids, and gave them a thorough washing, and then hung them in the sunshine to dry.  To say they smelled like a hospital, is putting it nicely!  These bears were used extensively at Sick Kids!  At times, Lydia's hands,which she tended to grip into fists, were pried open, and a bears leg or arm was inserted, to alleviate pressure and/or potential cuts in her palms from her fingernails.  At other times, they were used to prop her head up, as she could not hold it on her own; or they were put under elbows, like pillows, to prevent bed sores.  She never snuggled or enjoyed them, like most children would a plush toy, but they contributed to her recovery.  One of the nurses put a Sick Kids "Lydia" identification wrist band around each bear's neck, lest it got swept up with the linens and taken to the laundry.  They still wear these identification bands, and as we looked at them today, it was again with gratitude, for how far Lydia has come.  Much healing has happened, and much more is yet to come. 

Monday, October 15, 2012

Lydia becomes excited quickly and easily!  Her enthusiasm, and her sweetness or naivete resemble that of a child.  Tonight at dinner we talked about the ribbon waving homecoming - when it is, what it is about, and how each family member will be involved.  We also tossed around ideas of being involved in the St. Agatha and New Hamburg Christmas parades.  There are many in our community to thank!  At bedtime, Lydia said, "I am so excited for the green ribbon party!"  She is counting down the days.

Lydia began her at home therapy program today.  Tomorrow, she will see more therapists, and two educators.  Sometimes she goes to the therapists' clinics, but often they come here.

Today, I shared with Lydia another Christy Nockels song that I have been enjoying:  Wonderful.
On the third listen, she was singing along.  She dearly hopes to regain her voice.  She can sing, but not like before.  We continue to pray for a full recovery.


Christy Nockels

Sunday, October 14, 2012

Lydia seems to be over her growth spurt, or her rather excessive need for food and sleep!  The last two days, she has had a moderate appetite, and has only rested a few times during the day, but has not slept.  She has been bright, happy and alert.
This morning, after weeks of requesting it, we took her to church with us, for about half an hour.  She joined the youth for their worship time, then she went to the car and rested with James, until the boys and I joined them.  When I asked Lydia why she wanted to go to church, she simply said "to worship Jesus".  Her response was matter of fact, but her insistence on going was strong.  At breakfast, she shouted out gleefully, like a preschooler, "Yeah!  I can go to church today!"
This evening, James and I were able to go out together on a date, to a concert for Hidden Acres Camp.  The music was beautiful!  At one point, the audience was participating in a rousing version of "This Little Light of Mine", and I thought of Lydia, and how she is shining her light.  Sometimes her eyes just sparkle.  One time we told her this, and she replied: "It is Jesus' light shining in me".  We are increasingly aware that she has had a deep and beautiful journey with Jesus.  He has become central to her life.  He was there before, but perhaps on the sidelines, mixed in with other activities, and interests.  Now, He is central to her thoughts, her gratitude, her joy.  We pray that He may always be so - that as she heals, recovers and regains more activity and more interests, that she will continue to walk intimately with him.
Lest you think that Lydia is all angelic, we will share a funny moments.  She has started to say, "duh".  Yes, in that full attitudinal voice of a teen or preteen!  As if to say, "don't you know this?  It is so obvious!"  Tonight as I was trying to help her to wash her hands, I had the faucet on and the hand soap ready to pump into our hands, and she shouted "Mommy!  Pull up my sleeves!"  Now Lydia's speech is slurred and sometimes very hard to understand.  I didn't understand - even after a few attempts.  In frustration, she finally shouted, one word at a time: "Please-pull-up-my-sleeves!  Duh, Mommy!"  I finally understood, and could only laugh and apologize.  Thankfully she laughed too.  (We will have to maintain our diligence in teaching the lesson that "duh" is unacceptable language to use! )
With gratitude and joy in our hearts, we retire for another night.

Saturday, October 13, 2012

Lydia has had another good day.  We went swimming together and met a teacher who knew about Fatso.  She shared with us that in her school, they had eleven monarch caterpillars this year, and none of them made it to be a butterfly.  As we go out more in our community, we meet people we know, and those we don't.  Lydia said a few times today how happy she was to make a new friend.  

Lydia continues to delight us with her sweet spirit, her big smiles, and her laughter.  She saw some friends today, and enjoyed laughing with them, and sticking jube jubes on their foreheads.  We are thankful for carefree times like these when she can just be a teenager!

We have had many requests for more information about the homecoming celebration and ribbon waving.
So here are the details: Thursday November 1 at 5 pm, you are invited to park in the parking lot, or along our lane, and bring your tattered, weather worn lime green ribbons to wave in celebration of the many answered prayers and the progress that Lydia has made that has allowed her to return home.  "Yeah God!", as Lydia would cheer!  We will hope for sunshine, but will do it rain or shine.   We gather to welcome Lydia home, to cheer her on in her recovery,  and to recognize the power of prayer. 

Psalm 95:1  Come, let us sing for joy to the Lord; let us shout aloud to the Rock of our salvation.

Friday, October 12, 2012


Today Lydia enjoyed music therapy. Her fine motor skills are slowly improving and she is looking forward to playing the flute again. Her singing voice is improving as well, and she has a few simple little songs that she will break into spontaneously. We see glimpses of her sense of humour and wit returning.
Although she hadn't napped this afternoon, Lydia wanted to go to the arena to see part of her brother's hockey game tonight. She was excited to be with her hockey sisters again, and to sit in the sound booth.  The sound booth is a good spot for her, as she is easily overwhelmed by crowds of people.  (To give you an idea of her capacity, on Thanksgiving Monday, Lydia sat in a separate room, her therapy room, with four relatives, as the many conversations and commotion of our extended family of 24 would have been too exhausting for her.)  The New Hamburg Huskies all played with lime green tape on their sticks, a touching gesture of support for Lydia, and a homecoming surprise for her to enjoy.  The team might even leave the green tape on, as the boys won their game against a fairly strong team.   Our community is incredible. 
From the fullness of His grace we have all received one blessing after another.  John 1:16.  This week of joy and peace has been full of blessings.

Wednesday, October 10, 2012

Today has been a wonderful day with Lydia at home.  She is becoming more aware, and is thinking and processing a lot.  Ocassionally we see her sense of humour returning, and she is able to make a quick remark.
On the weekend, there were a couple of nights when she was awake a lot during the night.  Since she sleeps on a mattress on the floor in our bedroom, we were not appreciative of her night time alertness and processing.  She just couldn't turn her mind off.  She seemed to be reviewing all she knew.  For example, she would say " Ali is my cousin, and her younger sister is Josie.  Their parents are ...."  she would specify grades or ages of people, birth order, and other "stats".  At other times, she was remembering things that had happened that day, or in previous days.  (Her short term memory is improving!)  And other times, she was simply praying outloud.  In between all of this, she was requesting food!
Lydia has had a sore ankle and knee for the past few days.  These muscular pains are caused by the way in which she stands, walks and moves, still in an extensor tone, due to her injuries.  She is still on baclofen, a muscle relaxant, to try to help with this.  She is hyper-extending her knee, and pronating her foot, causing her pain.  Her PT taped her up today, and that has helped.  She looks like an Olympic athlete, with turquoise kin tape on her shoulder, knee and ankle.  She dreams of running,  and hopes to play soccer next year.  At times, she is aware of her limitations, and she mourns them.  Other times, she is content, and at peace with where she is at.   Today was a contented day.

Lydia is beginning to show us more glimpses of the intimate journey she has been on with Jesus.  This morning she said, "It's not about me.  I used to think it is about me, but it's not."  When I asked her "What is it about then?"  She looked at me, as if I should know the answer, and said "It's about Jesus!"  Yes, it is.  Yesterday, after leaving Holland Bloorview, she said that she feels sad for the people there, and that she will pray for them.  She does.  She prays a lot more, with such a trusting heart, and a complete confidence that her prayers are heard. We love you Lydia! 

Tuesday, October 9, 2012

Can we tell you how deeply satisfying it is to be the Herrle5 together again?  To unpack suitcases, knowing it is for the last time.  To actually put travel things away, because they won't be needed for a while - and when they are, may it be for a family holiday or therapy break together!

We returned to Holland Bloorview today to say goodbye to the many staff  who have worked closely with Lydia (and us) for the past three months.  Some of the nurses said to Lydia, "We will miss you and your bright smile".  She smiled and said, "Sorry, I won't miss you!"  She is super excited to be home!  Lydia will have a light schedule for the next few days, to rest, and enjoy home, before her new therapy schedule begins next week.

Our hearts have rejoiced in this day, and in the faithfulness and love of our Heavenly Father, to care for us, and bring us this far.  Over the past several years, my two favourite worship artists have been Steve Bell and Fernando Ortega, so it is hard to believe that a Fernando song has not made it to the blog yet!  Here is the one I have been singing today: Glory be to our great God!

Glory Be to Our Great God
Eternal God, unchanging
Mysterious, and unknown
Your boundless love, unfailing
In grace and mercy shown

Bright seraphim in endless flight
Around Your glorious throne
They raise their voices day and night
In praise to You alone

Glory be to our great God!

Glory be to our great God!

Lord, we are weak and frail
Helpless in the storm
Surround us with Your angels
Hold us in Your arms

Our cold and ruthless enemy
His pleasure is our harm
Rise up, O Lord, and he will flee
Before our sovereign God

Glory be to our great God!
Glory be to our great God!

Let every creature in the sea
And every flying bird
Let every mountain, every field
And valley of the earth
Let all the moons and all the stars
In all the universe
Sing praises to the living God
Who rules them by His Word

Glory be to our great God!

Monday, October 8, 2012

Lydia is very reactive and emotional.  She did not take well to the news that Fatso had died.  She cried.  The boys wanted Fatso's body for scientific exploration (Can we cut him open?!), but Lydia would not allow that.  In the end, he was returned to the earth, after a short prayer to the Creator of life, about the wonder of life and transformation.
We were encouraged to receive the following note from a teacher friend:  "Don't feel personally responsible if Fatso doesn't make it out of his chrysalis. Four teachers at my school, including me, have had monarch caterpillars and chrysalids in our classrooms this fall and the success rate has been terrible. I've had monarchs in my classroom for about the last 4 or 5 years and I've never seen a year when they did so poorly. I don't think a single one of my 4 caterpillars is going to make it successfully to the butterfly stage. One caterpillar died around the time it should have made a chrysalis, one butterfly died coming out of the chrysalis, another is turning black in its chrysalis and I have one last green chrysalis that is taking way too long to become transparent. Hopefully Fatso is just taking his time but if he doesn't make it, I just wanted you to know it may have nothing to do with how you've cared for him."  Lydia was reassured to know this, (and so were we!)
We enjoyed a wonderful Thanksgiving with the Herrle family today.  Lydia enjoyed seeing cousins, aunts and uncles and grandparents.  With grateful hearts, we remember how far she has come since Mother's Day, when we were all last together. 

Sunday, October 7, 2012

Isaiah 30:21 is a verse that has been meaningful to us.  (Being frequent listeners to James McDonald and Walk in the Word, we have known this verse for years, but it has taken on personal truth, as we have been led in this journey.)  Is 30:21 says:
Whether you turn to the left or to the right, you will hear a voice behind you, saying, "This is the way; walk in it."
As we have sought God, He has been so faithful to lead us each step of the way.  This has happened many times.  Recently, we have been praying, and have invited others in our close circle, to pray with us, to know when it is right for Lydia to continue her rehabilitation at home full time.  In other words, praying to know when we are to leave Holland Bloorview.  We have been seeking this for several weeks.  Lydia's repeated emotional rejections of HB last week, were telling indicators that it was time. 
As we have shared before, we have a wonderful home team of therapists, therapy support workers and teachers locally, who can help Lydia continue to recover.  Our case manager from KeyRehab contacted them last week, to see if everyone was able to swing into more regular action in treating Lydia, and they are.   We are thankful for their roles in caring for Lydia and helping her to recover.
Lydia will do better at home, and make better progress, as she is at peace here.  Last week, she was so anxious and distraught that her Doctor at HB agreed with our request to discharge her earlier than anticipated, as Lydia "was easily frustrated and not engaging well with the program or her therapists".
We are pleased to share with you that on Tuesday, we will return to Holland Bloorview for the last time with Lydia as an inpatient.  We will say thank you and good bye to her therapy team, teachers and support staff.  Lydia will particpate in her scheduled therapy sessions, and then we will return home together.  We have deep peace with this decision, and so does Lydia.  She is so happy to be home.
We will always be grateful for the role that Holland Bloorview has played in Lydia's recovery.  When she arrived there on July 12, she could not transfer from bed into her wheel chair, without the use of a Hoyer lift.  She could not: eat, drink or swallow; talk or communicate; use the washroom, sit up on her own, or walk.  Look how far she has come!  Praise God from whom ALL blessings flow.

For us, this year, Thanksgiving carries with it our gratitude that our daughter is home for good. She has a long road ahead, but she is now ready for the next part of the journey. After almost five months of hospitals, she is able to return home.  This morning in church, we sang Never Once by Matt Redman.  The lyrics ring so true: scars and struggles on the way, but with joy our hearts can say, never once did we ever walk alone.   There is joy when we worship, when we remember that we are never alone.  There is joy when we behold all that the Lord has done. 

Saturday, October 6, 2012

Lydia is recovering.  We know this because she asked to wear her skinny jeans!  Until now, she has been in yoga pants or track pants for therapy.  This weekend, she wanted her skinny jeans.  She also asked when we could go shopping!  She has asked repeatedly!  (Either she can't remember asking, or she really wants to go!)
James will want to take her shoe shopping, when she is able to wear something other than high tops.  His memories of their conversation, while waiting for the bus on the morning of May 17, were of Lydia telling him about her shoe shopping experience the previous evening: why she had chosen the shoes she had, and not others.  (Every father of a teenager can, no doubt, imagine the vivid descriptions of all the shoes she tried on and considered, but did not purchase!) James has carried those shoes with him on every trip to Sick Kids and Bloorview this summer and fall. They were returned to him after being retrieved at the accident scene. They represent a tangible reminder of his and Lydia's last pre-accident conversation.
Today Lydia has been very tired.   We may have lost count, but we think she had 6 naps throughout the day.  A nap ranges in length from 15 to 70 minutes.  Perhaps all of the emotion of this past week has made her very tired.  She is learning to say when she is tired and needs to rest.  We encourage her in this, as her brain requires a lot of rest, in all of the work it is doing to rewire.

Friday, October 5, 2012

As Lydia was coming down the stairs with me, we were talking about things to be thankful for. With her voice full of emotion she emphatically said she was most thankful to be home. Then she leaned over and kissed the wall of the house. It highlighted for us just how much Lydia longs to be home. We are grateful to have Lydia home with us for a long weekend, and to celebrate Thanksgiving together.  A friend just reminded us that the French translation of Thanksgiving is Action de Grace - action of grace.  How much grace has been bestowed upon us!  For every grace, we give thanks.
We have received tweets and emails about Lydia's ribbon waving homecoming.  We are glad that this dream of ours has been received with enthusiasm.  We don't know when we will do it yet; possibly the first Friday in November.  Lydia will be home before then, but logistically, we need our Farm Market to be closed for the season, so that we can use the parking lot.  We will drive Lydia through the parking lot and down the lane on the golf cart, and if we need more space, we have an additional 1 km of lane that goes through the farm.  We can make it a grand route if needed.  One of our favourite children's books is entitled All The Places To Love, and all those places are where you grow up and make memories, so we want to have Lydia's ribbon waving celebration at home.  Thank you for your prayers.  Lydia has been described as being "the community's daughter".  The amazing support we receive is proof of this title's accuracy.
This evening we took Lydia to the New Hamburg Recreation Complex to watch part of her brother's hockey game.  She was in the sound booth, with her "hockey sisters", playing the music.  She even pressed a few of the buttons!  She was delighted to go, and we are grateful that she has recovered enough to be able to go, walk into the arena,  greet folks, climb the stairs to the sound booth, and be with her friends.  Even though she had three naps today, the outing exhausted her.  She quickly fell asleep tonight.  

Thursday, October 4, 2012

Waving Lime Green Ribbons

Lydia's difficult week at Holland Bloorview continued today.  She is truly homesick.  Any mention of home, and she cries.  We are working to bring her home earlier than her planned discharge of mid November.  We have seen that she does very well at home, and we are fortunate to have a team in place to continue her therapy here.  We have connected with some educators who can "home school" her, and she will have music therapy weekly at home too.  Everything is coming together to have our girl home!  The boys are excited about this as well.
For a couple months now, we have been dreaming of a home coming for Lydia.  It is a simple, yet inspiring dream for us.  We imagine a day when we can invite our community, that has so wonderfully supported us, to take their lime green ribbons off their mailboxes, trees, lamp or porch posts, and bring them to line our lane way, and wave them for Lydia, as she returns home from Holland Bloorview for the last time.  What a moving display of encouragement that will be!
Lydia is beginning to be able to appreciate the many signs of support we see in the countryside around home.   She sees the green ribbons and know that they mean "pray for me", as she says.   We have also begun to read with Lydia the many cards, posters and notes that she has received.  (We read them to her as we received them, but understandably, she has no memory of them.)  She is also understanding that the blankets that cover her, were made for her, by loving hands and caring hearts.  As her cognition improves, she is able to grasp the vast circle of support that surrounds her. 

Wednesday, October 3, 2012

Today we celebrate the removal of Lydia's last tube - her G tube!  She is now tube free - breathing, eating, drinking, ...everything is working as it is designed to!  Psalm 130:13 I praise you because I am fearfully and wonderfully made.  All your works are wonderful, I know that full well!
The body's ability to heal, and recover, is amazing.  Lydia's doctor has told us that the G tube site will heal quite quickly, from the inside out.  Within hours, the stomach could almost completely seal.  The skin will take a bit longer, but will heal well in about a week. 
Lydia went swimming with Grandpa tonight, and put her face right in the water and kicked her legs.  She is determined to learn how to swim.  One of the sentences her teacher asked her to print was: I like swimming.  Lydia wrote: I love swimming.

Imagine with me, ten years from now ... Lydia is talking to a new acquaintance or friend, about the accident she had as a teenager ... showing the multiple scars on her head, her chest, her stomach from the different tubes that suppported her life, until she could survive without them.  I imagine the person shaking their head in disbelief as the story unfolds, .. what Lydia has lived through, by the grace and faithfulness of God.  I see Lydia smiling widely, as she shares how Jesus intimately made her new.
May God be glorified in that moment, and in each one preceeding it.  He is making her new.  We give Him thanks.

Tuesday, October 2, 2012

Lydia worked hard in her therapies and school today, but in between, she continued to struggle with wanting to be at home, even though James was with her all day.  Reminiscent of preschool days, we have her printing and her typing on our fridge.  Both are improving.  Her hand (specifically her right hand has been weaker, and more shaky, as she was hit on her right side.  They call it right side neglect.) is steadying.  She was able to copy two short sentences legibly, and to type some short sentences of her own.
We are not sure that Fatso will make it out of his coccoon.  He should have emerged after 9-12 days, but he hasn't yet.  At first, it reminded me of the memorable comment that an ICU doctor made of Lydia, back in late May, that she is not "progressing as well as they would like to see".  That comment was devastating.  We took it to God, and asked Him to work in His time.  And He faithfully showed us that He had his own timetable for Lydia, and His plans for her would be accomplished in His time.  We needed to relinquish our need for control, and let Him "take the wheel" and set the pace.  As I've pondered Fatso, stuck in his cocoon, I wondered if the same were true of  Fatso - if he simply was not progressing as other pupa, and that we just need to wait for his time.  Perhaps it is still true.  Or perhaps Fatso may not make it out of his coccoon.  (Quite possible, as we moved the milkweed many times to show Fatso to friends and family, and read afterwards that it should not be moved!) 

Christy Nockel's album Into the Glorious, continues to inspire us to worship.
How I Love You I am leaning
On You Jesus
With all my longing
Laid before you now
And all I've needed
Is You Jesus
And all my wanting
You satisfied somehow
There is no higher worth
In all the earth
But to love You
How I love You
No greater call
No life at all
But to love You
How I love You
You're my desire
Purify me
'Till I burn for you alone

Monday, October 1, 2012

Joy and sorrow are constant companions on this journey.  Today was bittersweet.  It was wonderful to have the exuberance of Lydia's brothers and cousins with her at Holland Bloorview, cheering her on in her therapy; and yet maybe their presence made it more difficult for Lydia, because all day long, she just asked"Can we please go home now?"  Sometimes she cried and protested being there. Other times, she just whispered that she didn't want to be there.  It is hard for her siblings and cousins to see her cry.  Their compassion leads them to want to comfort her and stop the crying.  Sometimes she cries all the harder at their tenderness.
There was laughter today, and some fun times too.  (We had just hoped for more of these, and very little of the sorrow.)  In OT, her therapist quickly changed plans to include all of us in a game of Go Fish. They are working on improving Lydia's short term memory, so it was a good challenge for Lydia to remember when it got to her turn, to ask her cousin if she had any fours!  (She did remember, and got the pair, to Josie's chagrin!)  We laughed when we played on the playground together today too. 
We pray that tomorrow is a better day for Lydia, and that she is more at peace at Holland Bloorview.  Perhaps with fewer cherished reminders of home with her, she will be more content.
At day's end, we return to a verse we have recited many times:
Romans 15:13  May the God of hope fill you with all joy and peace, as you trust in him, so that you may overflow with hope by the  power of the Holy Spirit.